Down but not out: A mother's story of raising a child with Down Syndrome

''You learn to create a life for yourself. What I am living is normal,'' says Shivani Dhillon.

Sarah Dhillon likes to wrestle with her 10-year-old brother Abhiraj. She loves cricket. Doesn't like staying indoors for a long time. She also likes cakes. And she doesn't want to share her French fries with anyone in the world. Every night at 9 pm, she puts her doll to sleep. The doll's name is Saira.

Shivani Dhillon is the mother of this calm little girl with who has been living with Down Syndrome (DS) ever since she was born-six years. Smiling often, this 37-year-old Chandigarh based woman says that parenthood itself is a challenge and raising a special child is just an additional one."I am blessed to have Sarah."

A mother of three children, Dhillon admits that what haunts her most is her daughter's future after she and her husband are no longer around. "That is true of all parents of special children. Also, I wanted my son and youngest daughter to have a normal sibling relationship, and also wanted the rest of children to share the responsibility." Dhillon brought together several parents whose wards are living with DS under an informal group Down Syndrome Support Group India on Facebook in 2012, which recently organised an event in March in Chandigarh.

Dhillon felt the need for such a platform after shifting from England, in the year 2012, where she saw several groups for such children. Stressing that much more needs to be done by the government and private sector for these children, she says, "We're aware that not much can be done medically, but what about therapy centres? Not everybody can afford to go to a top hospital." For her, it is important that these children learn life skills and parents don't pressurise them for academics. "The bar of studies has gone really high and our children are much slower as compared to others their age. Also, it's hard to get them admitted to regular schools. When they realise that they are different, several behavioural issues creep in." Talk to her about the level of sensitisation about DS, Dhillon feels that it would take several years for people to understand that and give an opportunity to those suffering from DS.

"Unlike abroad, the private sector is not willing to come forward. Those with DS have good organisational skills and are very social. They can be trained to work in the hospitality industry."